Search found 1343 matches
- Wed Oct 27, 2021 9:45 am
- Forum: The KPG Forum
- Topic: interesting Polycystic Kidney Disease research
- Replies: 1
- Views: 5692
interesting Polycystic Kidney Disease research
This was published in Nature Genetics earlier this month. https://www.nature.com/articles/s41588-021-00946-4?proof=t%29Nature Very early days but pretty amazing if this develops! Abstract Initiation of cyst formation in autosomal dominant polycystic kidney disease (ADPKD) occurs when kidney tubule c...
- Sun Aug 05, 2018 11:12 pm
- Forum: The KPG Forum
- Topic: ADTKD-UMOD
- Replies: 8
- Views: 19859
Re: ADTKD-UMOD
Hi John I just searched this forum for 'familial juvenile hyperuricemic nephropathy' (see search box, top right), and came up with one mention: http://www.kidneypatientguide.org.uk/forum/viewtopic.php?f=2&t=172&p=1056&hilit=familial+juvenile+hyperuricemic+nephropathy#p1056 – posted by Mi...
- Sun Aug 05, 2018 10:56 pm
- Forum: The KPG Forum
- Topic: Nephrology letter
- Replies: 7
- Views: 19908
Re: Nephrology letter
Hi Sue That letter is indeed a tough one to decipher. Even if you can work out what each bit means, the important thing is to know what it means in practice, i.e. what's next, or what you need to do. Please don't be upset that more people didn't respond – regular users of this forum, especially the ...
- Mon Feb 19, 2018 2:00 pm
- Forum: The KPG Forum
- Topic: Living Kidney donor loss earning
- Replies: 4
- Views: 12223
Re: Living Kidney donor loss earning
Paying a donor for loss of earnings is, I believe, at the discretion of the NHS Trust involved. Yes, perhaps another postcode lottery. My experience, at Southmead Hospital, Bristol, was very good. I only dealt directly with the transplant coordinator, supplying her with the details of the costs incu...
- Mon Feb 19, 2018 1:54 pm
- Forum: The KPG Forum
- Topic: How many have returned to work after transplant?
- Replies: 8
- Views: 19321
Re: How many have returned to work after transplant?
I'm a self-employed professional musician, now aged 50. After my first transplant in August 2007, I was back working a month later, taking it easy, but feeling great. After my second transplant in November 2012, I went along a week after leaving hospital (so 2 weeks post-tx) to a concert for which I...
- Wed Nov 01, 2017 11:20 pm
- Forum: The KPG Forum
- Topic: New Here, Chronic Pyelonephritis stage 1 or 2 CKD
- Replies: 3
- Views: 10595
Re: New Here, Chronic Glomerulonepphritis stage 1 or 2 CKD
Hi Dick Welcome along. I was one of the crash landers you mention back in 2006 – straight to dialysis aged 38. I have PKD which my mother also had, so I had a bit of pre-knowledge. I discovered this forum a few days later, and so many of the posts here were a pretty key thing that motivated me to de...
- Wed Nov 01, 2017 11:12 pm
- Forum: The KPG Forum
- Topic: Itching
- Replies: 4
- Views: 13598
Re: Itching
When I was on APD I often had itchy sessions – legs in particular. As jman says above, I was under the impression that it was caused by high phosphate levels. Check your dad's latest blood results (see http://www.rixg.org/results/phosphate.html for more info). Is he registered on PatientView ? If so...
- Mon May 15, 2017 9:18 pm
- Forum: The KPG Forum
- Topic: "Please Offer Me A Seat"
- Replies: 5
- Views: 15298
"Please Offer Me A Seat"
I haven't been here for a while. Was prompted to drop in by this image of something a friend just posted on Facebook (she has ME).
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You can order one here.
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You can order one here.
- Tue Jan 10, 2017 12:18 am
- Forum: The KPG Forum
- Topic: About to start PD. 'Pulling Sensation'?
- Replies: 4
- Views: 11666
Re: About to start PD. 'Pulling Sensation'?
Hi Katelou Just to add to what Dibs has already said, there are various new sensations that come with PD. I remember being told (or reading here) that some of them are due to nerves being triggered in ways that have never happened before within your peritoneum, and perhaps nearby. My PD experiences ...
- Fri Oct 21, 2016 9:34 am
- Forum: The KPG Forum
- Topic: TINU Syndrone
- Replies: 3
- Views: 11073
Re: TINU Syndrone
That's great to hear.
Yes other people's experiences are really useful. When I was first diagnosed in 2006 with end stage renal failure, i found the stories on this forum really inspirational, And the advice I got here was as useful if not more so than what I got from the doctors.
Yes other people's experiences are really useful. When I was first diagnosed in 2006 with end stage renal failure, i found the stories on this forum really inspirational, And the advice I got here was as useful if not more so than what I got from the doctors.
- Thu Oct 20, 2016 3:36 pm
- Forum: The KPG Forum
- Topic: TINU Syndrone
- Replies: 3
- Views: 11073
Re: TINU Syndrone
Hi G1970 Welcome along. I've just done a quick google of TINU Syndrome, and found a few medical papers. It looks very rare – as you say! Nobody's ever mentioned it here. I did find a post on this forum which may be a bit more useful . It sounds like you should be seeing a good renal consultant who c...
- Thu Sep 29, 2016 9:37 am
- Forum: The KPG Forum
- Topic: Hello everyone - Back again on here - Jim
- Replies: 11
- Views: 30858
Re: Hello everyone - Back again on here - Jim
Hi Jim How's it going? I missed your original posts back in June. I'm one of the moderators on this forum, and if you lost a password, we can fix that. Send me a Private Message or email if you like (click on my profile name and the options are there). I also attend Exeter Hospital – though live the...
- Thu Sep 29, 2016 9:30 am
- Forum: The KPG Forum
- Topic: TB
- Replies: 2
- Views: 8593
Re: TB
Hi Dean
Great about the transplant going well. Sorry to hear about TB. Looks like you've already searched online for support; did you come across this group, TBAlert.org?
Good luck.
Great about the transplant going well. Sorry to hear about TB. Looks like you've already searched online for support; did you come across this group, TBAlert.org?
Good luck.
- Wed Sep 28, 2016 10:28 am
- Forum: The KPG Forum
- Topic: Extended release Prograf [and Envarsus/Adoport]
- Replies: 7
- Views: 23959
Re: Extended release Advagraf [and Envarsus/Adoport]
Envarsus is clearly a generic version of Tacrolimus. I haven't come across it yet. There's another that's commonly used now in the UK, which is Adoport . This ( has been discussed here a bit before ). I was changed to Adoport on the day of my second transplant in 2012. For the next few days, my tors...
- Tue Sep 27, 2016 1:34 pm
- Forum: The KPG Forum
- Topic: Extended release Prograf [and Envarsus/Adoport]
- Replies: 7
- Views: 23959
Re: Extended release Prograf
Everything Rik said. I'm now on Advagraf (one pill every 24 hours) which replaced Prograf (one every 12 hours) and the change was very smooth – completely unnoticeable in fact. It seems to be working just fine. I was irritated when Advagraf was introduced, in particular by the way it was introduced ...